Tuesday, 21 July 2009

2 weeks till C moves. Sleep alludes me as thoughts run round my head. Visits to C’s new home are going as expected –difficult, traumatic. But each visit getting a little easier, its hard to know how much he understands. In this last year he has worn his helmet out – and I want to put him through a move again. The decisions we make for our children are over whelming at times.And both C and i have been managing our stress in different - but the same ways.

After 2 years of searching for a home a specialist home I thought would meet C's needs where he could grow, and had the right experience to cope with C’s level of challenging behaviour. But I knew after only 3 weeks it was not the right place. But I gave them a chance, and C a chance to settle. I tried talking to them. But the things they did continued to shock me, sadden me. I started looking elsewhere. I don’t entirely blame myself. Their initial assessments should have shown them it was not the right place for C. But they went ahead. They did a good PR job on me. They failed my son.

This time I feel the assessments have been a lot better and I have been involved. I was actually asked to go over Cs PCP – a first. I’ve been made to feel my insights into C are valid and useful. After all C has been training me for nearly 21 years.

I am also being involved in some important consultations where I can put C’s/my experience to good use. You can get involved too. And maybe we can save other people from going through what C and many others have had to endure.

The CQC’s draft guidance is very encouraging and positive. They will have new powers to ‘enforce’ standards and will not just have an impact on ALL care homes but other care providers such as GP’s, dentists, hospitals etc

Autistic people need allies and not just from parents. When C was small my motivations were getting him the right educational support etc. My views have evolved over the years and its now more about his human rights, dignity, respect and choice.

If we cant change the attitude of people who work with people with Autism what chance do we have with the rest of society.